I decided to write about my passion for gardening past, present and future.
I have been ill suffering with Lyme Disease since May 2003 but at last after long term antibiotic treatment getting my life back and can again enjoy my garden.

Monday, 12 October 2009

CHRONIC FATIGUE TO LYME

From Chronic Fatigue to Lyme: Medically Unexplained No More

Labelling sick patients psychiatric is medical abuse.

Over the past year, forces at the highest reaches of medicine have made ever stronger efforts to burden the sick, diseased, and infected with psychiatric labels, consigning them to often mind-numbing psych meds and untreated infection, immune dysfunction, and pain. Some critics see this as psychiatric abuse at the hands of non-psychiatrists --since it is rarely psychiatrists, but rather, those in other specialities who step outside the circle of their training to impose these crude diagnoses on the medically ill.

Pam has written some very in depth articles on Lyme Disease, links into some of her articles are on my side bar under Lyme Disease.

I would really like to copy the whole article but hope you will take the time to go to her article through the above link and read it yourselves in full. I expect there will be someone you know who has been labelled with a psychosomatic illness when now there is evidence that it could be a physical illness.

Further quotes from her article.

Other scientists in favor of restrictive treatment for Lyme disease have burdened women in particular with the stigma of psychiatric disease --contending that Chronic Fatigue Syndrome, chronic Lyme disease, and depression may really be one and the same. Gary Wormser and Eugene Shapiro, an infectious diseases doctor and a pediatrician respectively published the proposal in the Journal of Women's Health in 2009, despite lacking psychiatric training themselves.

When it comes to stigmatizing the sick, why let science interfere? Indeed, this past week the American Association for the Advancement of Science reported in its prestigious journal, Science, that 68% of chronic fatigue syndrome patients were infected with a new retrovirus, called xenotropic murine leukemia virus-related virus, or XMRV. (Just 3.7% of healthy people are infected) A follow-up study, also reported in the Science, raised the number of CFS patients infected with the retrovirus to 98%, in all.

Brian Fallon of Columbia University, has this to say about so many diseases presenting in similar ways: "Those who say that the patients with MUS (medically unexplained symptoms) have a purely psychological illness are missing the point about the commonality of these syndromes," he states. "The key element is that these illnesses share symptom profiles because these symptoms represent an abnormally perpetuated physiologic response. For example, it is well known that elevated proinflammatory cytokines produce these symptoms; also well known is the fact that depression can be a by-product of such an elevation because certain cytokines reduce the conversion of tryptophan to serotonin in the body.."

“Despite the effort to keep patients running on empty, science is moving on. “I think this establishes what had always been considered a psychiatric disease as an infectious disease,”Judy Mikovits, the scientist leading the retrovirus work at the Whittemore Peterson Institute in Reno, said this week in the New York Times.

Hillary Johnson, the author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, has said it best in her blog:"A nova has appeared in the constellation. We knew it would appear some day-but in our lifetimes? Many of us, having given up on recovery, had merely hoped we might live long enough to understand the scientific basis of our suffering. Thousands, perhaps hundreds of thousands, of us didn't make it, or simply gave up. Between the time Dr. Judy Mikovits of the Whittemore Peterson Institute and her collaborators at the National Cancer Institute and the Cleveland Clinic submitted their paper to Science and today, we know at least one woman, the British citizen Pamela Weston, chose assisted suicide rather than go on; in the note she left behind she wrote that she hoped her choice would, in some part, move the UK medical research forward. Might Weston have hung on had she known about XMRV? We grieve for those who couldn't wait, couldn't hang on, and acknowledge their bravery. For the rest of us, this is a day to celebrate"I urge everyone to read this as well as Johnson's prior post, a copy of a speech she recently gave in London in May 2009.

Pamela Weintraub is a senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic, first place winner of the American Medical Writers Association book award, 2009. A revised, updated PAPERBACK version of Cure Unknown will be published October 13, 2009. The update covers the topic here, and is available on Amazon for a little over $10. --------------------------------Many thanks Pam for all your efforts in fighting our corner.I will close with a sunset picture in the hope that not too many suns will set before the medical world starts to listen to what patients are saying.

19 comments:

Thanks for this comprehensive post Jo. I'm going to follow up your link after I've had a little lie down.

The psychiatric/psychosomatic illness debate is so complex. I think it is also time to destigmatise mental illness. A rheumy once said to me it was 'just' depression. Well, people die of depression and it is also a life limiting illness. I think that some of us want to find a 'medical' reason for our condition, since that would suggest there is a cause and a cure. The reality is much more complicated and uncomfortable than that. Whatever the cause, be it retrovirus, inherited genes, traumatic event or bacterial infection, our whole bodies, minds and body/minds are affected by illness. Every illness has a psychological component.

Joanne, An excellent read. Thank you. A colleague and I were talking about experiences clients have had with physicians who don't listen or worse, think them hysterical when they speak about knowing their bodies and symptoms. I love the sunset photo. gail

Hi JoMany thanks for your two pennyworth.I think the reality will be a cocktail of infections viral and bacterial for lyme and possibly ME/CFS as so many Lyme patients have corresponding symptoms with ME/CFS patients. Also genetic predisposition will no doubt be a part. Have a good rest and look forward to some more photos.

Gail I am now a firm believer in listening to our own bodies and guideing our doctors after all they only see us for a few minutes at a time and we are forgotten the minute we leave, but we live our symptoms.

Today I cycled uphill, in 2005 I had difficulty standing or walking across a room. It has been a very long journey of recovery.I was one of the lucky ones.

Great post Joanne, very eye opening and it makes you wonder just how many people suffer seom such illness without ever realising it or getting any help.

Doctors can be dodgy, my mum had cellulitis in her legs last year... She went to one doctor for more meds after her prescription had ended and to be signed off again (could barely walk, legs very swollen) and he told her 'ladies of a certain age suffer swollen legs', gave her water tablets and claimed she had severe asthma and couldn't believe she was able to breathe at all.... Um... Right, ok.So she had to waste her time going to see another doctor because that one was so useless. Ridiculous.

Alison Happy Thanksgiving to you and your family. I hope the new medication is still helping you.

Liz I do hope your mother is well now it must be nasty to have an infection like cellulitis I expect she was on antibiotics for it. I have a friend locally whose cellulitis was caused by Lyme Disease but she remembered the tick bite on her hand whilst on a boat trip on the river.It developed into vasculitis and although she soon got onto Doxycyclin she did suffer a few complications with her heart which was eventualy put down to her Lyme Disease. Now on stronger antibiotics she is doing well.

Interesting post from an interesting woman. I am very grateful that the two doctors who saw me through breast cancer, listened to my questions. I remember once, he settled himself in his chair, considered my question, and then, gave me his professional opinion. And it wasn't - you silly woman!

Elephant's eye. You were fortunate to get such a good consultant and I hope you continue with good health.I had a lumpectomy of the breast some years ago and was fortunate that it was not found to be cancerous. The treatment I recieved could not have been better. Sdly that is not the experience of many with ME/CFS or Lyme.

Isn't it maddening to have to go round and round with doctor's? I dislike when they don't listen... my cardiologist is great but we just found out we can't afford that insurance next year when the rates go up and we have to go with another insurance which only serves a different set of doctors! Nuts! Now I must go round trying to find a new one that has common sense! We have several friends who have Lyme Disease, in various stages. Hopefully meds will come round that will ease the pains and one day cure this beast.I was told I had Fibromyalgia a few years back after the doctor couldn't come up with any other reason for my ills...a rather flippant diagnosis. Funny how I tend to forget how it feels to have it because it only pops up rarely...but it's been here for three weeks and I remember how it feels now! Each day is a bit of an effort..but it is getting better this week...long live Ibuprofen...and here's to hoping my stomach hangs in there too!!I have always wanted to visit England and cottages and gardens and such there, so I enjoy your blog. I, too, can do without modern decor and style, preferring the homey country cottage life...dirt and all! Hope that you have a good and energetic week :)

Hi JoanneYour post is a good read! ~ I really like Pamela Weintraub. This is a good start for all who suffer with illnesses that have been brushed aside and dismissed in the name of medicine...Love the picture, too. Beautiful!

Thanks so much for such an interesting and informative post. I think doctors are all too quick to diagnose (and make the wrong diagnosis) and here in the States they often will not run tests that may provide answers because the insurance companies won't approve them and pay.

Ellie many thanks for all your comments. In my early stages I was diagnosed with Fibromyalgia. It is a description of symptoms and does not investigate into the cause of those symptoms. Thankfully yours seems to remit quite well so perhaps your immune system sorts out the cause. I am glad you like country cottages because within the next two posts I will be posting some.

Renee I agree, it is a good start and judgeing by what is buzzing around the internet the patients will drive this forward now as they are in Lyme.(Remembering that many of our LLMD's have personal experience of Lyme)

Joey Thank you for those kind words.

Ellie Mae Yes I am sure you are right sadly the tests for Lyme are only 50% reliable so sometimes work against the patient as Doctors are misled into thinking they are accurate.

For some reason Carol is unable to post a comment but she has kindly taken the trouble to e mail me so here is her comment.Thanks for visiting. Very good information on Lyme disease. That it can be prevented from turning into such a tragic disease just by taking antibiotics at the onset is a blessing as long as doctors diagnose and administer the meds. I think that's why we worry so much about our future medicine/insurance and all the politics that go with it if we allow our government to control it.

I'm able to visit your blog and read your posts...I'm just not able to leave a comment.

Have a good day.....let's see you are about 9 hours behind our time, right?

Carol

Carol you are quite right that early treatment is so crucial but the other argument is that Chronic Lyme can for many be treated with long term antibiotics and patients can go from bed ridden to returning to work.

counsellingme dot com is Peter Kemp's site in England. ME is the english name for chronic fatigue syndrome. He cultured spirochetes from the blood of at least 10 people with chronic fatigue syndrome. Meaning that they have lyme or related borellia. (I think all 10 tested negative for lyme) But of course you cannot be negative if spirochetes grow from your blood sample.

Hi Brian Thank you. I am aware of Peter Kemp's website and work. He presented this recently at a Parliamentary meeting on Lyme Disease. 19th January 2015.I started adding things to this blog about Lyme Disease but as tehre was so much of interest I decided to start another blog just for Lyme Disease - Looking at Lyme Disease link is in my right hand column of this blog. I started it late 2009? and 357,000 page views later it is still going strong and doing the job our Department of Health and media fails to do.

LYME LIFE written 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks, 4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. I have been retired early from the Civil Service having lost my job not to mention my earning potential.

My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said, but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer at the time I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area.

Thus started my very lengthy search about Lyme Disease leading me through http://www.lymediseaseaction.org.uk/ to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite the Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work.

Life is such a joy.

Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses.

Look at UK charity http://www.lymediseaseaction.org.uk/ if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one.

One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.